Hi all
Sorry, I'm posting in here for traffic but I'm trying to raise awareness of the below case! It's received some national press coverage today below. Ben has been battling a very rare, life threatening type of cancer affecting the tissues behind his eye. Previous treatments have so far failed. On the advice of his NHS medical team, he is due to have surgery in Amsterdam on 4th September but the NHS have denied funding. Ben's NHS medical team say this is his last chance and are totally behind this treatment. Ben is such a lovely, giving child and deserves every chance to beat this horrible disease. The funding is due to be reviewed, but not until September 13th, which means it would be too late for Ben's surgery on 4th and 12th.
(www.mirror.co.uk/news/uk-news/brave-schoolboy-battling-rare-cancer-11050805)
I have become aware of the case in a professional capacity and although I might not be able to help enough in that way, I wondered if any generous mumsnetters might be willing to help themselves. I've pasted the details below.
"Ben Tylecote is our wonderful, kind hearted, intelligent 13 year old boy. He loves sport and desperately wants to go back to school.
Ben has a very rare cancerous tumour growing behind his right eye.
This week, the NHS told us that they could not fund the £100,000 needed for an operation scheduled for the 4th September to remove his eye and the tumour. Ben urgently needs this treatment in the next 2 weeks, the advice from our consultant is that we cannot wait until September 13th when the decision to deny funding may be reviewed. The NHS have been fantastic but this is an aggressive cancer and time is critical.
We must find a way to raise the money ourselves.
Ben Tylecote is normal, sporty 13 year old boy who goes to the local school, Catmose College, Oakham. We noticed that Ben’s right eye was sticking out last summer and he was diagnosed in June 2016 with a tumour in the muscle behind the eye - Rhabdomyosarcoma.
He has endured a year of chemotherapy and proton beam therapy and had his 13th Birthday in hospital having chemo. Despite Ben’s inspiring emotional resilience and determination to move forward, the tumour hasn’t shrunk and the need for surgical intervention has reached a critical stage in order to prevent the cancer from spreading. The tumour is continuing to grow and now Ben can’t use his right eye at all. Last month, we were all ready for surgery to have the eye removed but it was called off at the last minute to review all options.
The NHS medical team has referred Ben to an Amsterdam hospital to ensure the best outcome for him. The eye and tumour will be removed and the area will be treated with a localised radiotherapy called brachytherapy, where an isotope is applied locally. This is very specialist treatment and is close to the brain and pituitary gland.
This operation in Amsterdam will cost at least £100,000 and we were due to fly out next week. The NHS have been fantastic but have denied us funding for this operation.
We have been amazed at Ben’s patience and tolerance throughout all the treatment. He has missed a lot of lessons this year and has visited his school to help the other children learn about cancer and that it is not contagious! "
Thank you so much 
If you cannot or prefer not to donate money, please spread awareness on social media or write to your MP and ask them to write to NHS England asking them to urgently review their decision in time for 4th September.
- [Please note, this post has been edited by MNHQ]